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I did what the medical and cancer organizations told me to do. I ate healthy food, exercised daily, and after having a baseline mammogram at age 35, began my annual trek for my screening mammogram.

Year after year, without any family history or risk of breast cancer that I knew of, I faithfully and happily went for my mammogram, never lamenting the inconvenience, radiation exposure or uncomfortable breast compression involved in the test. I believed that, in the unlikely event that I was diagnosed with breast cancer, my screening mammogram was a guarantee of finding cancer at an early stage, which means better treatment options and a better chance for long-term survival.

Sadly, I learned that for women like me the chance of having a cancer found by a screening mammogram were about as reliable as a coin toss.

Normal Mammograms? Not Really

In 2004, six weeks after my eleventh normal yearly mammogram, I had my annual gynecological exam. As my physician was examining my breasts, she felt a ridge in my right breast and ordered a diagnostic mammogram and an ultrasound because of the palpable finding. The mammogram showed nothing – but the ultrasound illuminated a quarter-sized lesion that was later determined to be stage 3c breast cancer.

How could this be? I just had a normal mammogram. The tragic news of my advanced-stage breast cancer, which had metastasized to 13 lymph nodes, catapulted me to uncover how my normal mammography report had been a lie for several years – with potentially deadly consequences.

Confused, perplexed and scared about my prognosis from this late-stage disease, I asked my new team of doctors why mammograms had failed to detect my cancer. In a nonchalant, matter-of-fact manner, each of my doctors informed me that my extremely dense breast tissue greatly limited the sensitivity of the mammogram to find my cancer. This was the first time I had heard the term "dense breast tissue" and was informed of its impact on the reliability of the so-called gold standard of breast cancer screening. At one of the most vulnerable times of my life, I was told a secret that had been well-known in the medical community for years.

'Patient Has Extremely Dense Breast Tissue ...'

In fact, for a decade prior to my diagnosis, radiologists had been reporting a woman’s breast tissue density and composition in a report, seldom shared with her, to her referring doctor. After gathering each of my 11 years of mammogram radiology reports, I found that they each read the same: "Patient has extremely dense tissue, no change from prior exam."

Shocked that my dense breast tissue had gotten got in the way of an early diagnosis, I hunted for information about dense breast tissue. Popular women’s publications and cancer and physician organization websites were void on the subject of this condition that had prevented my cancer from being detected, and resulted in less than a 50 percent chance of surviving five years because it wasn't discovered early. Searching medical journals, I uncovered a myriad of studies that first shocked me and later compelled me to bring this critical breast health information to women; since the medical and cancer community had failed to do so and had no plans to routinely tell women about their breast tissue composition.

A Fatal Flaw in Breast Cancer Screening With Mammograms

Scientific studies for more than two decades had demonstrated that 40 percent of women have dense breast tissue; as the density of the breasts increases, the sensitivity of mammograms decreases; there are other tests, such as an ultrasound or MRI, that can find small, invasive cancers that are invisible on mammogram. Decades of studies have concluded, without a doubt, that the size of a breast tumor upon discovery is the fundamental determinant of mortality.

Women with dense breast tissue are 17 times more likely to have interval cancers (missed on mammogram and detected by a manual breast exam before her next mammogram) than women with fatty breasts. Once a cancer can be felt by the woman or her doctor, all promises of early detection have vanished. Evidence-based medicine, including more than 150 studies, has established that a mammogram alone, in dense breasts, is not a sufficient screening tool for breast cancer. When I understood this fatal flaw in breast cancer screening, I began my quest to get this best-kept secret about dense breast tissue to the people who matter most – the ones who have it.

My Mission: Inform Women About Breast Density

My husband and I began working with the Connecticut Legislature, and since 2005, the Connecticut General Assembly has passed four laws regarding insurance coverage and density reporting to the patient. Connecticut’s landmark legislation has led to an additional 18 state density-reporting laws. This is a testament to the fact that there is no shortage of women diagnosed with later-stage cancers in spite of being faithful consumers of yearly mammograms. I launched two nonprofit organizations, Are You Dense Inc., and Are You Dense Advocacy, Inc., whose mission is to educate the public about the risks and screening challenges for women who have dense breast tissue.

I never imagined that my personal tragedy of an advanced-stage cancer diagnosis would catapult me into the role of global breast-health advocate. I am compelled to share my story to help others avoid an unnecessary late-stage diagnosis. Based on scientific studies, including Connecticut data, about 40,000 U.S. women get a "happy gram" report of their mammography results that states "normal" when they have hidden invasive cancer that will lurk in their dense tissue and, once palpable, be discovered at a later stage. There is no requirement that doctors speak to women about their dense breast tissue even though it predicts the accuracy of a mammogram at any age.

Are You Dense?

How can a woman advocate for her breast health when a critical aspect of breast cancer screening is withheld from her? Breast-density reporting legislation helps standardize communication about dense tissue to the patient so that every woman receives basic information about dense breast tissue. Legislation is not intended to replace breast health conversations and critical information between a healthcare provider and the patient. Informed conversations about dense breast tissue and personal risk factors will only occur once a patient becomes an equal partner with her health care providers about her personal breast cancer screening.

Ask your docs about your breast tissue composition. Even if you are in a state with a density reporting law, initiate the conversation with your healthcare providers about added tests after mammography if you have dense breasts. Remember – you are your best health advocate.

Nancy M. Cappello, Ph.D., is Director and Founder of Are You Dense, Inc., and Are You Dense Advocacy Inc., patient advocacy nonprofit organizations with the mission of educating the public about the risks and screening challenges of dense breast tissue to prevent missed, delayed and advanced-stage cancer. She is the recipient of numerous honors and awards and has presented her story and mission across the U.S., Canada, Puerto Rico and Italy. Download the Are You Dense? App to learn about screening tests for dense breasts.

Last Updated:7/21/2014

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